As we explored building up a care team last month, I wanted to take this opportunity to dive into a few of the treatment plans, therapies, and healing modalities that put my chronic illness stemming from Tick Borne Illness in full remission in 2022. I wanted to share these tips with you in case it aids you on your journey!
Find a Lyme literate doctor (LLMD)
First of all, start with IGeneX— it is the most accurate Lyme test on the market. An LLMD (Lyme Literate Medical Doctor) is crucial if you have Lyme and Tick Borne Illnesses. The Global Lyme Alliance has a phenomenal tool (here) for finding someone near you! I trust Dr. Casey Kelley at Case Health in Chicago with my care to this day. She is a functional medicine doctor who has had lived experience with tick-borne illnesses. She is compassionate and knows her stuff. After an initial in-person appointment, she will do telehealth. She will also dig deep into any autoimmune issues Lyme may have caused, and she believes gut health is essential for healing. She also often prescribes holistic IV therapy. I also had a session with their Pain Management MD, Dr. Agarwal, and found an injection of Ozone into my knee for pain was extremely helpful. For me, IV therapy and having a PICC Line and then a chest port, were critical to ensuring continuous IV access and vein preservation. If you want to know more about living with a PICC Line, or more pros and cons, check out our PICC resources here.
Alternative therapies
I also set up care with The BioMed Center in Providence, RI, for vitamin IVs and biomedical healing (Dr. Kelley coordinated with them). There, I received Ozone therapy, which was a big factor in my detox plan and it boosted my immune system. I wish I’d started it sooner. Their clinic is based on a Lyme clinic in Switzerland that many patients in the community have traveled to. Their philosophy is similar to Dr. Kelley’s.
Other helpful healers on my care team use the practices of: Reiki, Thai Massage, Polarity Therapy, and Lymph Drainage. These modalities have played a critical role in reducing my pain, detoxing, and moving the bacteria out of my body. I had found working with someone 1-2 times per week was critical for my pain when I was at the height of needing support.
Mental Health:
The biggest breakthrough I had in putting my depression and medical PTSD into remission was undergoing Ketamine Assisted Psychotherapy (KAP) and working with a clinician who is a licensed medical expert in psychiatry and ketamine therapy. In KAP, a trained therapist administers a low dose of ketamine to the patient, who then undergoes a guided therapy session. The effects of ketamine can help to lower inhibitions and allow patients to access deep emotions and memories that may be difficult to reach through traditional talk therapy alone. The therapist helps the patient to explore and process these emotions in a safe and supportive environment.
In early studies, KAP has shown promising results, particularly for treatment-resistant depression and PTSD. However, it is important to note that ketamine is a powerful medication with potential side effects, and trained professionals should only conduct KAP in a clinical setting. You can read more about my experience with KAP in this blog: Ketamine Therapy Changed My Life.
In addition to KAP, I began working with a Chronic Illness Coach and Death Doula, Ash Canty (he/they), who could help me to unpack and integrate my experience of living in a disabled and chronically ill body in an ablest society. I knew Ash was the right coach for me because he also had a chest port and struggled with POTS and can provide tips and coaching on how chronic illness can be a blessing in disguise. You can check out Ash’s podcast here.
Other specialists
From 2017-2022, I was prescribed IVIG. IVIG stands for intravenous immunoglobulin. It is a sterile, highly purified preparation of immunoglobulin G (IgG) derived from the blood plasma of thousands of healthy donors (thank you, donors!). IVIG is used as a treatment for various autoimmune and inflammatory conditions, such as immune thrombocytopenia, Kawasaki disease, and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).
The mechanism of action of IVIG is not fully understood, but it is thought to work by modulating the immune system and reducing inflammation. IVIG is given intravenously, I used my PICC line and then my chest port. It can also be administered through a method called SubQ (Subcutaneous) or using a peripheral intravenous catheter (PIVC), which is a traditional IV. IVIG can be administered in the home, hospital, or infusion center and I received all of my doses in the home. The dose and frequency of treatment depend on the specific condition being treated. Like any medical treatment, IVIG has potential side effects, including allergic reactions, headache, and nausea, so check with your specialist to see if this is a treatment you are a candidate for.
Charities
The Global Lyme Alliance (GLA) and Project Lyme are two of my favorite Lyme organizations. They both aim to raise funds for Lyme research, treatment, and mental health. Mighty Well has collaborated with Global Lyme Alliance and Project Lyme to help raise awareness and fundraise for these incredible charities. They both are extraordinary communities, however, I found that Project Lyme’s offshoot for millennials, Generation Lyme, is the most extensive help in supporting one another on a day-to-day basis.
Other resources:
-You can listen to my full journey on the Tick Bootcamp Podcast. It is a long episode, but I go into detail about many of the healing modalities above.
–Advocacy Express is the easiest way to advocate for Lyme legislation change, which is currently going through Congress.
–Flores Lane Candles have helped me to be centered. Founded by a fellow Lyme warrior and advocate, Trish Baden.
Final note
As I and most other patients know, chronic illness and tick-borne disease are not a one-size-fits-all treatment plan. What works for me might not work for you — and vice versa. This is meant to be an honest recount of my own personal health journey, and I encourage you to discuss options with your medical care team to see what is in the best interest of your health and healing.
Wherever your journey is right now, I wish you luck and healing! Remember, no matter how tough it gets, you are not alone ?